Good morning Foggy Followers!
You know when, in the UK, the weather people say ‘don’t forget that you’ll lose an hour’s sleep tonight because of the clocks going forward?’. They could have told my body that, losing one hour’s sleep would have been lovely! Instead, I was awake at 01:57 (old time)….*sob*.
I’m making the most of my insomnia and writing a blog!
So much has been going on recently it’s hard to choose what to write about! Busy-ness has caused all sorts of symptoms to flare – eye twitching, anyone?! However, I am going to write about my current ongoing issues surrounding trying to get an MRI scan and seemingly non-M.E./C.F.S. aware physios.
I think I’ve written a blog previously about having my ‘nerve’ pain investigated by neurologists, these consultant neurologists have both said (5 years apart) that I need to be referred for an MRI as they suspect that my pain problems all originate from my neck/spine. There is nothing wrong with my nerves – according to neurology consultants. The first referral suggestion went walkies somewhere never to be seen again (*Foggy* That was careless! Don’t let me go walkies on my own!).
The second neurologist said ”Well, nothing showed on your last MRI scan so I’m not sure where we go from here….’
Me – ‘What MRI scan?’
Neurologist – ‘The one you were sent for after your skin cancer op complications that left you in pain in your right leg but wasn’t nerve related…..’
Me -‘Um…I didn’t have an MRI, I didn’t know that had even been recommended’.
Neurologist – ‘Ahh. OK. I’m going to recommend that your GP refers you for an MRI’.
(Paraphrasing as it was a couple of months ago and I have now had 3 hrs sleep so it’s a bit foggy but you get the gist).
I waited a week for the notes to transfer over to the GP and made an appointment. I was told that there was nothing in my notes 5 yrs ago about an MRI being recommended (*Foggy* Grrr) and that the best pathway was to self-refer to the physio team at my local hospital as GPs ‘can’t refer for MRIs’.
Before I go into the next bit, you should all know that the most recent neurologist stated categorically that physio would not help with my current pain issues. He couldn’t understand why I had been put through 6 weeks of physio 5 years ago for the same pain issue. Physiotherapy didn’t help 5 years ago.
I self-referred to my local physio department. Foggy’s Twitter Followers will know how wary I 
was of being given an exercise schedule (GET anyone?!) but saw it as the only way to get access to an MRI scan. In my opinion, it’s just hurdle jumping.
I had the initial assessment, was reassured that I wouldn’t be forced into doing any exercise that I felt I couldn’t cope with and made another appointment to start ‘treatment’ the following week.
Oh boy.
I was going through slight payback on the day of the appointment, not enough to cancel but bad enough to mention it when I arrived at the appointment. I was under the care of a student physio, with a senior physio listening in from behind the curtain (doing paperwork, I think). I didn’t feel that my M.E./C.F.S. was taken seriously as the exercises I was being instructed to do didn’t take into account my dizziness, feeling off balance, muscle fatigue or my general feeling of whole body weakness. I was doing the ‘Superman’ on a treatment table. I even joked that I hoped she would catch me if I toppled over!
I was given core strengthening exercises to do. 4 different exercises to do for a couple of minutes twice a day. I had to give up 2 of them during the appointment as it was too much. I left with ‘let’s give it 6 weeks and then we’ll think about if you need an MRI’.
This is when it gets interesting…..
The next day, I attempted the exercises. I managed a third of it before my body said ‘no way Jose!’. I listened to my body and stopped when it told me to. I didn’t push through.
I tweeted about it and ‘met’ a fantastic person who is now retired but used to be a senior physiotherapist/lecturer. I won’t name her now (I’ll call her Lisa in this blog (not her real name!)) but if she is reading this, I am so grateful for her intervention. I am not doing the ‘official’ physio exercises now.
I shared my exercises with Lisa, she was surprised that I hadn’t been given written instructions/print outs/stick drawing instructions by my physio. That was her first observation.
Her second observation was that the exercises I had been given were M.E./C.F.S. inappropriate. They were ‘advanced’. A private Twitter thread ensued and Lisa was getting more and more angry on my behalf. It resulted in her apologising on behalf of her profession. I am very grateful for her expertise and understanding of M.E./C.F.S.
Lisa has given me alternative gentler exercises to try with the strict instruction to stop if I feel they are too much for me. I had 4 days of payback after attempting the ‘official’ physio exercises, didn’t want to risk payback when Stripy launched so didn’t attempt any exercises last week and have had payback from my London trip. I will be starting the new gentle physio today or tomorrow.
I have decided to forget about getting an MRI scan. Even if something shows up, there won’t be treatment for it in the UK! I’m going to try and tighten core muscles to support my neck and spine but that will be the limit now.
I feel thoroughly let down by my local NHS ‘machine’, each cog doesn’t seem to want to play fairly with other cogs or with me as a patient!
FYI – Neck braces. I asked Lisa if my idea of wearing one for a couple of hours a day to relieve pressure on my neck would cause muscles to weaken even further. She advised that neck braces are ok if temporary and only used for a few hours each day. Ebay here I come!
Love
Sally
and Foggy (OBVIOUSLY)
xxx